Thanks to everyone! I am not sure what is going on with me. I am in diagnosis limbo. about 8 years ago I started with this terrible itch and sores on my scalp. And I had a red flush across my cheeks and nose. Since I was starting a new high stress job and was allergic to everything anyway I just assumed it was a combo reaction (oh and I was also in the middle of a looong divorce) to everything going on. I have always had a bag of issues so one or two more didn't seem to be a big deal. And so it went for a long time. Fast forward to now and a really bad cold/bronchitis. Nothing worked and I wound up in the ER unable to breathe. They gave me a breathing treatment that didn't work. I left feeling frustrated- even after I had my say! A couple of days later my GP gave me a script for methylprednisolone. I started to feel better right away. Except that my usual aches and pains (joints and migraines) got worse. But that slowly started to go away. I started to research what its used to treat and I came upon Lupus. It was like reading a history of my life- suddenly I felt a wave of relief (weird huh?) Suddenly my nasal polyps, kidney stones, hot flashes, scalp issues (which a derm looked at for about 30 secs and told me I had rosacea on my scalp and face- but nothing he prescribed ever worked) joint pain, migraines, upset stomach, sinusitis, FATIGUE (really bad). I always just thought that I was high maintenance. But maybe not. So I got with my GP and he agreed that it could be lupus. He wanted to wait until I had all of the steroids out of my system before any testing. In the meantime he sent me to the pulmonologist who was about to start clinical studies for sleep apnea. He was really selling the sleep apnea diagnosis until I told him that I didn't want to participate in the studies he told me I had asthma and allergies. He discounted all of my PFT results and the lung blockage that the other 2 doctors had been concerned by. He wrote me a script for Singulair and Azmocort and sent me on my way. So now I am waiting to take the tests. I hate being in limbo and being sick, sad and tired. On top of everything else whenever I try a new med I react really badly to a lot of them. Bright red color all over my body and nausea and congestion about 90% of the time. It takes me about 2 days before I start feeling better. So then I miss work (I am a manager in a warehouse for a retail giant) and I feel guilty. Really guilty because managers aren't supposed to miss work. We are supposed to be tough and set the example. Outside of several kidney stones (all operations) I haven't missed work in almost 9 years. But since I don't have a "reason" most of my co-workers seem to think I should just "suck it up". Its almost like I want the Dr. to give me a finite answer so that I can say "Here it is- on paper. Its not in my head. Dr. Mike says so!" People have actually called me a hypochondriac to my face. Like I don't have a hrad enough time getting out of bed in the morning- that makes me want to crawl right back in! Has anyone else felt this kind of pressure to "just get over it"? I am just so frustrated and scared. Because what if (and I feel it to the bottom of my toes that this is what I have) I do have Lupus? What if the meds make me feel worse? I have been thin for most of my life but I gained 60 lbs over the last three years since I am often in pain or tired or if the sun is out (oooh horrible rash and nausea being in the sun) which is why I work nights! I am so tired of being this "new" me- I want my easier life back. Anyone else sick, sad and tired (and scared)? And what do I do if they just don't know what's wrong with me? What do you guys do? How do I demand an answer? Thanks for listening to my crazy ramblings- nice first post huh? Please don't kick me out! :)

to get the answers you need you will have to push, push, push ... sometimes change doctors ... i stand to be corrected but the best doc to dx lupus would be a rheumatologist ... so if the GP gets 'positive' bloodwork he would in all likely hood send you to a rheumie ... bloodwrok is only 1 of 11 criteria to determine lupus (i have just fired my rheumie of 6 years and be seeing a new one going forward) he was great to start but i think his forte is dx not long term treatment.i was dx in 2003 and still sometimes think it is my head but it isn't ... ppl are downright mean and don't realize the damage they do by the things they say so as we 'grow thicker skins' and learn to shrug them off we hurt & hurt like hell ... that is why this is a great place ... reading posts have enlightened me more than the string of docs i have been to.i also felt the relief of having a pos dx. explained all my 'hyperchondriac years' the multitude of mis-dx etc. and gave me a way forward.

Hang in there ... you will find plenty of support!

PS i also have reactions to most meds. don't give up but don't be disillusioned ... it is a long road and can get bumpy but just keep going!

Hi Trish!!! You do sound like you could have lupus we all tend to be in limbo for sometime. I went threw a couple of rhumys and derm. I went to a teaching hosiptal where I was diagnois. The sun is horrible on us lupuies, in the mean time use sunscreen, wear long sleeves, and a hat. Don't worry about what people think I know that is hard to do, your sick and you have do what needs to be done. I feel for you belieave me it's so tuff to work and feel the way you do!! Nobody on this forum will kick you out that's what were here for, to help one another so you can vent all you want ask any question if we can answere them. Take Care DebbieAsthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux

Oh you guys! Thank you so much for all the kind words and advice! It is so nice to have people who know what its like to feel like I am losing my mind. For so long others had me convinced I was just a wuss and I accepted it. But now I know that things like Lupus do exist. And even if it turns out to be something else I feel like I am chasing something tangible for the first time. It will be a long road (I have a feeling) but at the end I just might get my life back. Thanks for giving me the courage to try.Thanks!

You said "please don't kick me out" and I say welcome back! Come as often and stay as long as you want! That's what this forum is for.

I hope you'll make an appointment to see a rheumatologist. Your pcp isn't trained to diagnose lupus. Lupus is a very difficult disease to diagnose because it's not all about lab work. Eight years is a long time to suffer.

Pat

P.S. I love your grandmother. I've always said, "it is what it is" because we must learn to accept the hand life deals us and keep smiling.SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

Thanks so much Pat! I am seeing my GP tomorrow- and I am planning on asking him for a referral to rheumatologist. Because of insurance reasons I have to have a referral. I hope that he will just give it to me without any hassle and I hope that this referral is better than the pulmonologist I got. I am in small town America and the choices are rather limited. I have a question for everyone: does anyone ever have huge bursts of energy followed by pure exhaustion? Or maybe I am just having moments of normalcy followed by fatigue. I am not sure.Thanks!

Yes, I do, though I wouldn't call it "huge" bursts of energy, but more like normalcy. When I get some energy and do too much (which means that I'm at 50% of my old self for about 50% of the time) I pay for it for a couple of days. It's hard, but I'm working on finding healthy limits.SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

Oh thank you! Lately I have been really really tired but I get bursts of energy (exactly like my "old self"!). This part is kind of new to me. I have always liked sleep. But until the last 6-7 months I didn't feel like I absolutely needed it. Now I find myself struggling to stay awake durng my breaks at work (especially the hour long dinner break!). Sometimes I work right through or I do a dinner run for the people that work with me (I am a manager at a warehouse. Mgrs can leave for dinner and hourly associates/employees aren't allowed to. So if they want icecream or something special for dinner or forget to bring dinner- I will use my dinner to go on a run). It keeps me tired but its not as bad as not quite resting and having to gear up for the rest of the shift (I work nights). So anyway, feeling tired and bad and blah most of the time is really new. I am still struggling with the criticism from other people. Because I don't have something in writing, it isn't real. Part of me wonders how long I will be miserable, for someone to say something IS wrong. How messed up is that? I am hoping for a dx so that can feel better about feeling bad? Thanks for all of the support- I am so lucky that I found this place!Thanks!

hi again ... even with my pos dx i sometimes feel like it isn't real ... drugs make a lot seem 'unreal' ... but i am not on any now so it isn't just them.burst of energy / burst of normalcy ... i tend to do myself in by taking advantage of the 'energy burst' & getting lots done BUT i have learned thru enough flares that pacing myself can get me thru longer peiods with less 'payback' ... it took years to learn to 'let things go' and get used to being the one to set my pace as i discover the 'new me' ... i am learning to listen to myself (which is the blessing here ... maybe)

... i don't know all that you have been thru but i agree 8 years of illness is a long time! no dx yet ... you are stronger than you think!

I'm right there with you. It has been almost 4 years of being sad, sick, and tired for me. I know how you feel about wanting/NEEDING a diagnosis. I have been called a hypochondriac as well even lazy. My family, especially my husband, believe that all my symptoms are in my head. I know that is untrue. I didn't use to feel like this. It's sad and overwhelming. I'm just a shell of who I used to be. No one seems to believe me, I think my husband thinks I'm lazy. I'm a stay at home mom who can barely manage to get up the energy to take care of my two boys let alone clean this house. It's hard. I'm 100% sure that it is not in my head. I'm also tired of being diagnosed with depression. I am not depressed. I have a positive ANA test. I've been referred to a rheumotologist, but will not be able to see him until July. So, more waiting. I hate this feeling. I'm going to Jamaica in 2 weeks and I'm not even a little bit excited. I'm actually fearful what the sun will do to me and how tired I will be. I feel like an old woman and I'm only 29. So, I'm sorry you are going through this. I do understand how you feel.

Jenna- I totally get everything that you are saying! They say "how are you feeling" they mean "Again??" Its like when people are anorexic and really sick, and some stupid stupid person comes along and says "why can't you just eat?" Sick is sick. And just because someone can't or won't understand it doesn't make it less real. Its especially hurtful when its someone you expect more from.

I am rambling a bit because today I had my blood draw for a slew of tests. I am not sure what to hope for: no conclusive results and more wondering or conclusinve results that point to something serious. Either way the doc syas most of the results will be ready tomorrow. I am really lucky because my GP is really great. And appointments (even first ones) happen pretty quick even with specialists. I got the referral for my pulmonologist on Friday and got an appointment on Wednesday. I guess its one of the good things about living in podunk- not alot of competition! In fact it takes me longer to get in to my GP (Dr. Mike is wonderful- of course that's just his first name to protect his identity and kee my competition down!) He is sooo cute and really cares. Plus he has that James Dean way of talking that is so sexy! He is only 1 year older than me so all through school, jr high and high school I got to crush on him. Now I really respect him and like him (his wife and children are of course beautiful!) I wish he could just treat me and not have to see another doc- darn! Well wish me luck with my tests!Thanks!

Hey Trish . . . add me to the tired after energy group. I am usually very careful about using "the energy". I do for a while and then I rest (even if I don't need to). Then if I am up to it, I'll tackle some more work. But I really try not to plow head-on into a big job without dividing it for breaks. Pacing my energy has helped me stay relatively well for a good long time now.

Will be watching for your update on that bloodwork.

Blessings!

In His Grip

AlwaysRosie "We can't control the waves, but we can learn how to surf!!"

Thanks for the tip Rosie! I still have some painting to do in my house so I will try the dividing it up into breaks plan! Well the bloodwork came back today. The CBC came back okay, but the nurse at the GP told me that the inflammatory tests came back really high. She didn't tell me which test was which (it was over the phone- I was okay with that) specifically, but she did tell me that since these tests are so generic, they couldn't really give specific information. She told me that my doctor thought that it would be a good idea to see a rheumatologist because that way more in depth testing could be done to better pinpoint the specific areas or problem. So basically the bloodwork was odd enough that my GP (who really is amazing) felt it would be better for me to see the rheumy. And if I wasn't lucky enough to have a very responsible doctor- it turns out my specialist will be only 1 hour away (which is great here in smalltown, America) and my new doc is a chick!!! I feel like I just won the lottery. So the nurse told me that they will fax all of my info over to the specialist and make the appointment and get back to me early next week. How messed up am I that I am excited about this appt?

Okay so here is where I could use some help- what can I expect to happen on my first visit? What should I ask? What information should I include? And finally- how personal will the questions be? My mom is coming so I just want to kind of know what could happen. My mom, by the way, is the mom that everyone would like to have. ANd I feel really lucky that she's mine! Thanks again guys- its so nice to have this place to come with such great people to help me and listen!Thanks!

It's strange, isn't it, to Want a diagnosis. Your story hits a nerve with me because you describe just how I felt before I got my diagnosis. It's all about being validated. You know there is something wrong but no one believes you.

Well, your PCP does, although I'm sorry your inflammation markers were so high. Good luck with your new rheumy. I hope you like him or her & do let us know how your appointment goes.

If you check in the "Lupus Resources" thread at the top of the page, you'll see a post where we all pooled our thoughts together to make a list of what you should be prepared to answer at your first visit.